Post Benzo Freedom Withdrawal Support Group

[[gi...]]

Hi V(NM),

 

I was tapering lamictal (down to 75mgs)  but have gone back up to 300mgs; 400 was my max.  My sleep was getting worse, my mania getting even worse than my sleep, and I ended up having a really, really bad manic episode last week that prompted me to add more back into my system.  I won't be trying that again any time soon; I have enough on my plate!  I slept an hour more last night than I have in a long time. so maybe it's working.

 

take care -

g

 

 

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I just thought I'd mention to all you post-ies out there a discovery i just had; as i wrote yesterday my anxiety has been really high of late, particularly the past few days. Laying in bed unable to sleep last night I sat bolt upright when i realized the last few days I have been taking a new multi vitamin loaded with B vitamins. I had been avoiding them during my taper and the first 10 months after...and never thought they could affect me...but this morning I did not take any, and I'm feeling a bit better already. The same thing happened to me when i tried alcohol 2x, both times got hit by a relentless anxiety. The last few days was the same type of unexplained over the top reaction. I can't believe I never thought twice about reintroducing the B's....! More proof my CNS is far from healed, i guess.

[[Pa...]]

Good detective work Bill! 

[[ve...]]

Thanks for posting that Bill.  I also added a "stress B-complex" pill daily back in August (at 9months post taper) and been increasing a single dose of niacin (which is a B element) from 100 a day to now up to 350mg a day (to hopefully increase my HDL good cholesterol numbers).  I have definitely noticed an increase in anxiety too, although not unmanageable.  I am going to wait til my blood test in two weeks to see how my cholesterol numbers turn out.  I'm ok with a little added anxiety if my risk for stroke or heart attack is diminished by higher HDL numbers .  I will post my one year update along with those next lab results in about two weeks.

 

Best,

 

V (NM)

[[Re...]]

    My thoughts were like ginger's, I thought that exactly at the 12 month mark that I would be totally healed of the insomnia and tinnitus and everything else for that matter, but I got blind-sided with disappointment.  But a ray of hope at the 14th month mark when the insomnia turned completely around for me.  Now I am sleeping like a new born babe!  The tinniuis is still chiming away, but at least I have adapted and the bells no longer bother me - most of the time I don't even notice.  I now know that things could possibly take additional months, maybe even another year to settle down; I can live with that.  I do get the occasional flair-up of old symptoms, but they only last an hour here or there.  I will say that most of the time I am experiencing 95% healing.  Once the tinnitus fizzles out then hello 100%

 

    Staying the course...and I encourage you to to the same.

[[ve...]]

     My thoughts were like ginger's, I thought that exactly at the 12 month mark that I would be totally healed of the insomnia and tinnitus and everything else for that matter, but I got blind-sided with disappointment.  But a ray of hope at the 14th month mark when the insomnia turned completely around for me.  Now I am sleeping like a new born babe!  The tinniuis is still chiming away, but at least I have adapted and the bells no longer bother me - most of the time I don't even notice.  I now know that things could possibly take additional months, maybe even another year to settle down; I can live with that.  I do get the occasional flair-up of old symptoms, but they only last an hour here or there.  I will say that most of the time I am experiencing 95% healing.  Once the tinnitus fizzles out then hello 100%

Staying the course...and I encourage you to to the same.

 

Thanks for the update Retire.  Glad to hear the tinnitus is waning and that sleep has returned.  I have had a big swing in restful sleep in the last month too (at 10 and 11 months post benzo)  Very restful rem type sleep, remembering dreams, not getting up multiple times in the night...  We'll see how many positives I can report on next month when I reach the one year off point.  I never thought this would last more than six months post taper, but a couple symptoms and setbacks along the way, such as Shingles back in January really caused my nervous system to take a hit .  I am currently at about 90% though, still have one more taper to go.  Will be back in a few weeks to post a formal one year off report.

 

Keep staying the course

 

Vertigo (no more)

[[gi...]]

Retire, hey, good for you!! Only 14 months and you're doing so well!!  I'm jealous!  I'd love to sleep... but I had problems sleeping long before benzos, and 25 years of sleep meds didn't help.  Maybe some day I'll get a solid 5 hours - I'll feel like Rip Van Winkle when I do!  My tinnitus still rages, too; sometimes it's just there, but most of the time it's just horrible. It keeps me up, wakes me up, and still sometimes even makes me cry. I've had very, very few windows in the last 2 years (and the last one was in Feb.) but none of them have been "full" because of the tinnitus.  My ENT told me not to expect it to go completely away. Some websites have said that, too.

 

V(NM) I'm so happy for you, that you're doing so much better, too!!

 

Here's to another day!

 

g

[[ve...]]

Decided to lose the B complex and see if it might help reduce anxiety.  Still gonna keep taking the niacin to try and raise HDL numbers, next blood test at the doctor in 12 days .

 

Happy Halloween everyone :wacko:

 

Vertigo (no more)

[[le...]]

Hello All,

 

It is always good to catch up with "the posties" (as Bill called us) through this thread.

 

Today I am discouraged by yet another night with relatively no sleep.  Vertigo, I think I told you I can almost predict my morning blood sugar based upon my sleep (or lack thereof) the night before.  This morning it was 99, after an 83 earlier in the week.  There is definitely a connection for me.  The things that keep me from sleeping are all physical in nature...mostly pain that is so much worse once I am laying down.  Nothing seems to help the pain (except excedrin, which has caffeine).  Every now and then I will take a norco...but even that backfires because it makes me itch so that I can't sleep.  Last night, it got cold here in Austin...and under "normal" conditions I would be under a comforter or some other really warm blanket...but because of the sensitivity of my skin, I can't sleep under anything heavy and I can't sleep with my legs (the lower portion) under any cover at all.  So I found myself trying to get my upper body warm with a heating pad, while trying to keep my legs cool.

AGHHHHH!  It gets SO frustrating...the pillow, the blanket, the mattress, etc.  If I could sleep on a cloud...or in water...that would be ideal.

 

Ginger, I admire your tenacity at always pushing through, especially for the amount of time you have been doing it.  It has helped me all along the way, to be able to watch and to see that it CAN be done.  I wonder how much the lack of sleep plays into making everything else worse?

 

Vertigo, I don't know if you saw on my blog that the visit to a new neurologist revealed that I do, after all, have "L4 nerve root injury-inflammation most likely due to shingles".  This is in that left leg, where all of my symptoms have been worse.  I forgot to ask if the damage will go away?

 

Bill, are you still going for acupuncture?  I got a one-time "deal" from our local "groupon" for a 90 minute session for $29.  I haven't done it yet, but I am thinking that I am now not so sensitive as I was back earlier this year and so it might be a good thing to try.  Thank you for telling us about your vitamin experience!  It is amazing, isn't it, to think that our CNS can still be so sensitive this far out?

 

OK...thanks to all of you for being such good fellow warriors and for sharing your experiences with the rest of us!

 

~Leena

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Vertigo - I'm guessing you're trying to lower cholesterol - I have a friend who lowered it a lot - about 70 pts. - by exercise and no meat / chicken ... I'll be curious to see how the elimination of B vits. work with you. I'm convinced they revved up my anxiety earlier in the week - I felt much like I had when i tried some alcohol in the summer... a crazy over the top anxiety, totally uncalled for. It's odd because i can drink gallons of coffee which disturb some people, but apparently I can't touch alcohol or B vits.

 

Leena - Good to see you again. I was wondering how you were - I've been off the site for most of the summer. I did ask my acupuncturist if she knew any doctors in your area, she didn't - Florida has a few , but that's a long way from you....When I hear you say you didn't sleep because of physical symptoms, i feel like saying I'll trade you mine for yours...my issues of late have been pure OCD/anxiety at night - I guess what ever we have, other people  seem to have it better - I am still going for the acupuncture - but it's wiping me out financially. By end of year I will have spent $4,000. And I'm paying in part for my son's college....So I'm trying to cut down. I reserve it for times when I'm in bad shape from not sleeping - I am always guaranteed a night of sleep after a treatment. It helps , but it is short lived; In a perfect world, we could do what they do in China - go twice a day. ( my doctor told me how they use acup. in China to cure drug addictions - they keep the needlees in for long periods, the patients end up sleeping for days ).  I hope your treatment helps you, let me know how it goes.

[[ve...]]

Hi Bill, Leena, Ginger and the rest.  Leena, sorry to hear you are still dealing with post shingles leg trauma. I still get occasional tingling on the tip of my nose or forehead once in a while, it's been 10 months but I've heard it can take a long time to heal.  Sleep can also be a great healer. Hope you find a good pillow soon .

 

Bill.  Thanks again for your post.  Yes, the reason I added niacin was for cholesterol, but to increase the HDL (good cholesterol numbers).  A healthy male "should" be above 40 HDL (I think it's 50 for women).  My last test back in August was HDL 38.  Next blood test in two weeks.  

 

I have been taking a statin to lower the LDL (bad cholesterol) and triglycerides for about two years.  Those turned up within normal back in August, although the LDL could use a little lower number.  I think it was right at 100 last time.  I was feeling pretty bloated, tired, overweight and pre diabetic two months ago.  That is partly why I decided to add a stress B complex vitamin which also had extra vitamin C in it.  It's hard for me to know if my current fatigue/anxiety is related to diet changes, exercise, supplements or something else at this point.  I've been exercising regularly and watching what I eat (down 20 pounds in the last ten weeks).  Feeling pretty good most of the day except some afternoon fatigue (which I've had most of my life).   I consider my post benzo nervous system to still be healing but I'd say I'd say most days, I'm about85-90% of the way there,  so the above health issues are mostly things that I have been dealing with for four or five years.  I've said many times that I had anxiety before I ever took a valium pill, had anxiety most of my life.  I think the exercise and diet have helped with my night time sleep and I expect better lab numbers next month, although it could be a little off since I cut my statin pill in half as of about a week ago, hoping to increase my energy levels and eliminate some impact of any s/x from taking a statin.  

 

Hang in there Ginger.  The tinnitus may still improve some with time.  Meanwhile, stay focused on your healing and enjoying the 80% that is healed now .

 

Gotta run,

 

Vertigo (no more)

[[Re...]]

Hey Vertigo,

 

Glad that you are sleeping better; ain't sleep grand these days.  Like you, the middle of the night awakenings are all but nill now.  For months I was waking up 2-3 times in the night to make a potty run, or not.  My body would just wake up like clockwork.  I'm so glad that has stopped, because it sure put a damper on me having to get right back up and prepare for work.  What a difference time makes.  I'm rooting for you when you hit that 1 year (anniversary) mark!  What a feeling of accomplishment, but still more healing to go.

 

Hey Ginger, I'm sorry about the tinnitus.  It is the pitts.  It will be two years February 2011 that I have been dealing with tinnitus.  The tinnitus, insomnia and fatigue plagued me to no end last year (and earlier this year), but now the fatigue is gone, the insomnia is fading (after 14 horrendous months of it), and the tinnitus, although still chiming away, is not as bad as it was.  I pray that we both can see an end to the ringing and chimming in the months to come.  We are no longer at the mercy of the benzo, but we are at the discretion of time, and I'd rather take time over benzos any day.  Maybe us pre-veterans in the fight will get total relief real soon, but in the meantime, I'd rather be where I am now than where I was this time last year.  Ginger, I hope that you have many windows, and much relief from the tinnitus because that symptom alone is very unnerving. 

 

Stay the course all!

[[ve...]]

Hey Vertigo,Glad that you are sleeping better; ain't sleep grand these days.  Like you, the middle of the night awakenings are all but nill now.  For months I was waking up 2-3 times in the night to make a potty run, or not.  My body would just wake up like clockwork.  I'm so glad that has stopped, because it sure put a damper on me having to get right back up and prepare for work.  What a difference time makes.  I'm rooting for you when you hit that 1 year (anniversary) mark!  What a feeling of accomplishment, but still more healing to go.

 

Indeed it is fab to sleep well again, better than before benzos too .  Yes, 1 year is in some ways a random number.  I suspect there may still be a little ways to go, maybe another 10% or so, but much progress has been logged. It's kinda strange coming up on the year because of how sick my father was at this time last October and November.  It seems like I am in a very different place emotionally and physically a year later.  Well, more on that next month.

 

Have a great weekend all,

 

Vertigo (no more)

[[gi...]]

Hi V(NM),  My doctor attributes my amazingly perfect cholesterol levels to the amount of exercise I do, which is 1 hour minimum every day. I say amazing because I eat all kinds of crap!  How much do you exercise? It's getting harder and harder to do what I do at the gym. Lately I've just been focusing on rehabbing my knee, I fatigue so easily.

 

Hi Leena,  I definitely equate amped symptoms with lack of sleep.  Mine has gotten even more horrendous - I'm down to sleeping 45 minutes before bolting wide awake - and now my bones burn all the time. I'm also particularly vulnerable to depression with lack of sleep.  I have literally tried everything to help me sleep, all to no avail.  I know one can't die from lack of sleep, but one can die earlier!  I'm glad my tenacity is setting a good example; believe me, if I could curl up in a ball I would!  But the ghosts of my fiercely defiant mother and sister, who fought long hard battles until their ends, would haunt me if I gave up!

 

Hi Bill, Good to see you around.  You know, I tried acupuncture for headaches and insomnia. After 2x/week for a month I was falling asleep on the table and didn't have a headache for an hour or so after the treatment, but that's as good as it got. She also gave me a bottle of chinese herbs for insomnia, which I took religiously for 2 weeks (the entire bottle), but they didn't do anything, either.  I burned up my bank account and then gave up. My 2 year anniversary with my tinnitus is Feb 2011, too! Woohoo! We'll throw a party, toot some noise makers...wait, we don't need them, we have them in our heads!!

 

Here's to better days y'all!

 

ginger

[[ve...]]

Hi V(NM),  My doctor attributes my amazingly perfect cholesterol levels to the amount of exercise I do, which is 1 hour minimum every day. I say amazing because I eat all kinds of crap!  How much do you exercise? It's getting harder and harder to do what I do at the gym. Lately I've just been focusing on rehabbing my knee, I fatigue so easily.

 

Hi Ginger.  I am currently lifting weights more heavily twice a week and once a week milder weights.  I try to walk or get on the exercise bike at home at least three times a week for 25-30 minutes.  On the weekends, I try to go for a bike ride, hike or play some sport with my son.  An hour of exercise 7 days a week sounds like a lot.  I recently read in a couple books that its important to give the body a day or two off each week to recover. Of course with weight lifting, it's wise to give a day in between work outs to allow recovery along with the whole idea of muscle confusion, mixing up the exercises and muscles that are targeted.  I also try to alter the time of day that I exercise.  I read that the body temperature is warmer around 2-4PM as opposed to first thing in the morning.  Well, 10 more pounds to go.  Hope you can sleep better soon.  Changing pillows recently helped my sleep along too .  

 

Best,

 

Vertigo (no more)

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Hi V & G,

I have been following the Dean Ornish plan for a healthy heart for about 10 years ( not the diet, which is way too difficult for me,  but the exercise part) - i'm 58 yrs old and no problem w/ cholesterol - I eat a sort of healthy diet, little or no red meat, but the important piece i think is the 30 minutes of aerobic exercise a day, 6 days  a week ( 3 hrs. a week) (minimum) which is apparently the minimum for a healthy heart. I used to do aerobics/ bike stuff, but with lower back problems now, I just walk, it seems to do the trick.

 

Ginger - From speaking w/ many people on this site, i get the feeling there is a wide discrepency in the way each acup. Dr. works - my Dr. leaves me w/ the needles for at least an hour. I always sleep better, if only for that night. In a perfect world, 2 or 3 sessions a week would rock my world, as they say......

[[gi...]]

Hi V(NM)-  I'm rehabbing my knee from ACL reconstruction so I have to work it every day. I only go to the gym 6 days; the 7th I just do leg exercises at home. The upper body stuff I've cut back to every-other day. I totally destroyed my muscles during w/d and I'm really paying for it now; I can barely carry 10 lb weights and I used to curl 20's!  Endorphins are the only addiction I still indulge!

 

I tried new pillows, new sheets, different beds... I've tried everything.  :'(  I guess, as Warren Zevon said, "I'll sleep when I'm dead"

 

Hi Bill - yeah, acu is a real crapshoot.  I wish I could afford to do more but having not gotten any relief I just can't justify it.

 

Here's to better days!

 

g

[[le...]]

Hi Ginger,

 

I was wondering if you would clarify what you said here about destroying your muscles.  Did you mean that the process of withdrawal destroyed them...or that you destroyed them during withdrawal by working out too hard?

 

The whole muscle thing continues to baffle me, especially since I have had so many muscle issues during withdrawal.  I just want to understand how withdrawal does what it does to muscles.

 

~Leena

[[gi...]]

Hi Ginger,

 

I was wondering if you would clarify what you said here about destroying your muscles.  Did you mean that the process of withdrawal destroyed them...or that you destroyed them during withdrawal by working out too hard?

 

The whole muscle thing continues to baffle me, especially since I have had so many muscle issues during withdrawal.  I just want to understand how withdrawal does what it does to muscles.

 

~Leena

 

 

Loss of muscle mass is a potential symptom of w/d. It's due to the way our bodies process protein and physio anxiety includes amped heart rate and increased calorie burn.  I was warned to eat lots of protein and lay off sugar, but I went into total comfort food mode and practically lived on crackers and sweets for 8 months.  I was literally burning calories in my sleep, I was so tormented, restless, and sweating like crazy. I couldn't sit still, I couldn't rest; the only thing I was able to do "regularly" was work out, oddly enough. 

 

I dropped 20 pounds in 3 months and burned off all my muscle all over my body, and all my upper body fat, too.  For a year now I've been working out responsibly, plus for the last 16 months or so I've been drinking whey shakes before or after working out.  I take creatine, D, B6, calcium, I'm doing it all. I've gained 10 pounds more than I should weigh, but all of it is fat in my lower body. I don't have any muscle; from the waist up my bones stick out and I have "arm flaps". From the waist down, you can grab whole handfuls of flesh, and there's nothing to resist the pull; all fat, no muscle.  I had ACL reconstruction and am desperate to get my quad back, and really feel like I'm in an uphill battle.  I'm following all the weight lifter guides, my trainer at the gym, a personal trainer friend, etc. - nothing is working in getting my upper body back. My quad is a bit bigger but I don't think it's where it should be!

 

What's going on with you?

 

ginger

[[am...]]

Ginger have you tried cycling for lower body mass building?  It's very effective and relatively easy on the knees. 

[[BY...]]

Ginger,

 

I don't know what your workout routine and diet consists of, so will suggest a few things.

 

You may already know this, but if you workout too much, you can actually lose muscle, as muscle needs time to heal. Also, you might try a combination of anaerobic and aerobic exercise.

Water exercise, is also great and has low impact on the joints.

You may also need more glycogen. Without the proper blend of glycogen, muscle mass can be hard to obtain.

 

Mike

[[gi...]]

Hi Mike, James -

 

Mike I'll look for glycogen. it's the only thing I'm not taking!

 

I do upper body e/o day doing mostly back and arms, only 1 chest and 1 shoulder, per my chiropractor and personal trainer's advice; 200 crunches/day, legs/core every day. I have 2 sets of leg exercises that I trade off on. I have to do legs every day for my knee.  I bike 15 mins/3x week with a little resistance (again, knee rehab - can't do more than that right now), elliptical trainer 10 mins + trot on treadmill 3 mins + backward trot on treadmill 3 mins/ 3x/week. 

 

Before I hurt my knee I rode 45 mins/day, 5 days/week, and before w/d I also did weight lifting for an hour, full body, 5-6 days a week - for 25 YEARS - I was an animal! I never burned up any muscle until I went into w/d.  I've always been well proportioned and pretty solid. Well... until 2009!  I know I totally did this to myself. My problem now is getting it back. I literally don't have the fibers any more.

 

I've never been a runner so 3 minutes, especially on a bum knee, is a real accomplishment! I just started swimming, too; I'm up to 2 laps on a board and then 2 laps of breast stroke, 2x/week.  I'm still swimming in circles, as my L knee has other ideas, but it's learning!  I've also started doing suckups (aka wind sprints) but I have to do those really slow. Still, I'm pretty pathetic.  I'm also old!

 

Any suggestions guys?

 

ginger

 

 

[[BY...]]

Ginger,

 

Just posted some info in the General Health & Wellbeing section. I was going to give you all the information, from my notes, but that link saved me from having to type it all.

 

Mike

[[am...]]

You don't need glycogen supplements (is there such a thing?) , it is a naturally created substance, the mammalian secondary fuel source stored in muscles and the liver.  It is an instant use fuel source.  As long as you are eating properly your body will convert glucose into glycogen, when your glucose levels fall below a certain threshold the glycogen stores will be converted back to glucose.  You aren't training at a level that would deplete your glycogen stores.

 

 

[[BY...]]

Forgot it's in V's post titled: What is Fueling your Fatigue and other Withdrawal Symptoms?